About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Tuesday, January 22, 2013

Since it's been a while since my last post, I want to give you a quick update.

Harlie is STILL on oxygen. I am trying so hard to be patient - after all, I have virtually no control over the situation. But, it is not easy. It has been over two weeks now! She has only been to school for two and a half days since December 21st. And in all that time, from then to now, she has only left the house a few times - those two and a half days for school and a few doctor's appointments (and the ER). I am getting cabin fever for her!

And I want my house back, I want my routine back. I want her to go to school and learn and try to make friends. We check her sats regularly to see where she is. We give her short breaks (sometimes long breaks) from the oxygen, each time hoping that she'll keep her numbers up.

Sunday she seemed to do well. And I really thought she turned the corner. But, her numbers were low again today. I can't tell if the breaks are setting us back, or what. But after a while she wants the oxygen off and she wants to be free from the tubing. Plus, she simply will NOT wear an HME (which humidifies the air she breathes) when she's wearing the oxygen. I guess the trach mask rubs up against and it must hurt. So, the oxygen dries her out and causes mucus plugs. Sometimes, keeping her airway clear is a full-time job! We've gone through tons of saline bullets and suction catheters.

And frankly, worrying about it and thinking about all the school she's missing has really worn me out.

You might remember my story about how difficult it was to get more oxygen tanks delivered... well, last week, during one of Harlie's breaks from the oxygen, Rooney got to her tubing and chewed up a connector piece that connects the tubing from the oxygen concentrator to her trach mask. It was the only one I had. We managed to save it temporarily with medical tape. And I made the mental note to ask for more when I put my supply order in the next week.

Well, on Wednesday night Rooney got to it again (ugh!) and destroyed it. The next day we tried other things to hook her to the oxygen during the day. But, nothing else worked.

It was pouring rain - a real disgusting day (Thursday). And I had to go out and get some boots and gloves for the kids because we were supposed to get some snow on Friday. Well, more than three snowflakes, and they cancel school. So, we were planning on them being home. And since it snows so rarely here, I knew the boys would want to be out in it. So, while I was out looking for winter wear (like every other mom in town who doesn't plan ahead) I called my DME (supply company) to try to explain what part I needed and see if they would bring it to me. Trying to describe it proved difficult. Well, I didn't think it was difficult to describe it, but it was difficult for them to understand what I wanted. Whatever.

I was thinking that since it was the thing I needed to supply oxygen to Harlie, that they would deliver it to me - the same as they would oxygen. Well, I thought wrong. And not only that, but she said that she could put it in UPS and I'd have it the next day. Huh? How is that acceptable? What would I do until then? Seriously???? Again, it's oxygen, people. So frustrating. In fact, I was so frustrated that I kind of went off on this lady - not in a mad, yelling kind of way, but more like a complaining, no one is trying to help me kind of way. She said I could come pick up the part. Great. I suppose that's better than nothing, but it's downtown (and will take me over an hour to get there and back), it's pouring outside, and I haven't found boots yet and I have to pick up the boys by noon. Awesome.

So, I hung up the phone and a lady standing nearby said, "I'm sorry, I couldn't help overhearing your conversation." And then she asked me some questions like, is it for your daughter, how old is she, is she in the hospital or home, etc. Then she told me that her husband is a quadriplegic and she has been caring for him at their home for the last six years. And that she just put him in a home (VA hospital or something in another town over an hour away) yesterday. She said that she knows how hard it is to be a caregiver and how much it takes out of you and she just wanted to give me a hug.

Can you believe that? She started crying and well, I simply cannot see someone cry without crying myself, so then I started crying. I wasn't sad for myself, I was just sad that it has to be so hard to care for someone you love. And how sad she must be to not have him at home anymore because she knew she couldn't do it anymore (she was probably in her 70s). She was probably out shopping simply because she could. Or maybe she didn't want to be home all alone.

And then I started to think of all my special moms. Especially you, Ann. And I wish that we could all live closer. Because no one understands how exhausting it can be unless you've done it yourself. And this lady knew. She totally got it. And I felt so sad for her.

So, we said good-bye and I left the store with two pairs of boots - one for Murphy and one for Cooper. I felt terrible buying just boots for the boys. But, I wasn't sure Harlie could even go out in the snow - or that she'd want to. And the boots were more than I wanted to spend in the first place. I called Tom and told him how much they cost and he told me to try Wal-mart. While we are not fans, they often have inexpensive snow boots - and with as little snow as Richmond gets, they will do.

At this point, I am calling Terri often, asking how Harlie's numbers are without being on oxygen. Low 80s, which isn't great. But, not an emergency, either. And now, there is no way I can get downtown, and back before noon to pick up the boys (me and a friend take turns picking up our boys since they are in the same class and we live on the same street). So, I go to Wal-mart first, find boots, buy them, with the plan of returning the more expensive ones, and then go to the preschool. Pick up the boys, deliver J home, and then grab a snack for me and Cooper and head right back out again to go get that part.

I get there, and the parts they have for me are not correct. Luckily a respiratory therapist that has come to my house a million times to do monthly checks on the equipment was there and she and I get along great. I was able to explain to her what I needed. Just in case you're interested here is what the set up looks like...

The green straps go around her neck so the mask part (trach collar) hangs in front of the trach. The trach collar connects to the corrugated tubing. Then you need a part that connects the bigger tubing of the corrugated part to the smaller tubing of the oxygen line. The oxygen line is the small tubing on the right. And it runs through the house and upstairs to the oxygen concentrator.

Here's a close up of the part I'm talking about...

You see the tubing with the ridges, then a small clear plastic piece, then a white plastic piece, then the oxygen line. The white plastic piece is what Rooney destroyed. I think the RT called it a "clown hat." Anyway, I suppose it doesn't really matter. We finally got it worked out and I took my parts home and promptly put Harlie back on oxygen. Then I took a really deep breath. This oxygen dependancy thing is really quite worrisome and is really taking some major energy out of me.

Thursday night it started snowing, and just like predicted it stuck to the roads. It had been raining for like three days straight, so everything was so wet. Including the snow. I took Rooney for his first walk out in the snow. He was not excited about it until he realized he could eat it. Then he was all about it.

And yes, of course they canceled school. And no way my nurse wanted to drive in that stuff, so she didn't work that day, either. That left me with the kids. Ugh. I knew that the boys would want to go sledding at the school (there is a great hill over there). But, there was no way I could take Harlie. Even if I was okay with taking her - I knew there was no way she could walk back up the hill after sledding down. And the oxygen, etc. - no way. Luckily, Murphy totally understood and didn't make me feel guilty about it at all. He didn't mention it again, and didn't even complain that he couldn't go. He can be so great sometimes.

But, I did struggle a bit with Harlie. For one, when I tried the boots on the boys Thursday night, she pointed to herself asking where hers were. Ugh. Luckily, we had a pair of boots from a few years ago that are two sizes too big for Cooper. So, I grabbed them, and gave them to Cooper, and then gave the boots I bought for Cooper to Harlie (they wear the same size - isn't that crazy?). She was cool with that. All boots I buy are universal in color for that very reason.

So, on Friday, she wanted to go out in the snow. I tried to distract her. But when she went to the communication device and said, "I want sled" I knew there was no getting out of it. I know she's recovering from pneumonia. And yes, she's still on oxygen. But, it snows like once a year here. How could I tell her no? She has to have some fun, too! And she's been stuck in this house for weeks and weeks! Plus, she put her coat and boots on all by herself.

So, I let her. We stayed in the front yard. It has a bit of a slope to it, so the boys were sledding down our yard (I love how they did what they could without complaining!). So, I put her on the sled and pushed her down a few times. After about three walks up the yard she was done. I knew that little bit of "exercise" was wiping her out. We went back inside and hooked her back up to the oxygen. And that was it of her time in the snow. No pictures. I tried, but one camera's battery was dead and the other's memory card was full. And my cell must not have been handy.

But, luckily it was handy later... Harlie had just watched Wild Kratts (an animal show). When it ended she said something that sounded like Wild Kratts. Well, it had either two syllables or two words. I wanted to show her the word "another" on her communication device. So I asked her if she wanted to watch another Wild Kratts. She said no, and then repeated what she wanted to watch. Which I would have sworn was Wild Kratts. Well, I was afraid that she didn't know what "another" meant. So, I asked her if she wanted more Wild Kratts. She said no, and continued to repeat it - with complete patience. I am a brick, so this horrible "conversation" went on for longer than necessary.

I asked her to give me a clue with the device, does it have an animal in it? What kind? But she shooed the device away (which is unusual). She must have repeated herself 20+ times. I wanted to video her saying it so I could post it on Facebook and ask if anyone else could understand her. Cooper was in the room, and I asked him (because sometimes he knows what she's saying) but he didn't know either. It was really ridiculous. I finally gave up and told her that I just didn't understand what she was saying. And I said I was sorry a bunch of times because I felt like crap. I really, really hate these moments and they just make me so angry that she can't talk. UGH!

She got up and left the couch and I thought she gave up from trying to watch whatever it was that she wanted to watch. I got up, too, and went to straighten up the kitchen. Harlie came into the kitchen with the bin full of markers and a piece of paper. I thought, "oh, good, no TV, she's going to color, awesome!" But then she said, "Mama" and pointed to her paper. And this is what it was...

SpongeBob Square Pants

SpongeBob!!! That's what she was saying!!! I cannot even begin to explain my reaction. I was a mess of emotions. The fact that she sat there, so patient with me, and thought of drawing a picture - all by herself - of what she wanted to communicate to me was just amazing. And it totally proves how freaking smart and resourceful that little girl is!!! Well, at least it does in my mind. Not to mention how fantastic her drawing is!!! And that she drew it in a yellow marker, just to make sure I would get it. I was laughing, I was crying, I called Tom, I called my mother, I posted it on Facebook. Whew! She was pretty proud of all the attention this drawing of hers was getting. And I put SpongeBob on TV, of course!

By Sunday she seemed to be getting better and was staying off the oxygen for longer breaks. We really thought she was turning the corner. I ran the Frostbite 15k that morning. It was 45 degrees, and pretty perfect running weather. Afterwards, we went to brunch at Eat in Oregon Hill. It was so yummy!

Niki and me.

Left to right, Les, Ginny, Niki, me, Michelle, Scott,Brad, Tom, Andrew (you really can't see any of them) and Rick.

We had a great time. Lots of laughs all around.

By Sunday night, Harlie's numbers were looking better without oxygen. Woohoo! The kids didn't have school on Monday, so I thought by Tuesday, she'd be good to go. Her pediatrician told me earlier in the week to keep her home from school as long as she's on oxygen. He said she's still recovering and if she caught something else, the combo could land her in the hospital and she'd miss even more school. Well, okay, fine.

We put her on oxygen during the night, and then let her have a break after she was awake. She did okay for a while, but then slowly her numbers went down again. By noonish or so, she was back on the oxygen again. Grrrr!

Plus, the dreaded reaction to the antibiotic combo she was on has hit full force. It has really done a number on her GI system. So, between that and the oxygen, she's in no way ready for school tomorrow. Total bummer.

Well, as usual I have much more to share with you, but I am falling asleep as I type now. So, I have to go. So much for my "quick" update!

5 comments:

Looking back to Thursday, I can't believe you still got the boys and didn't call me! Crazy girl!! I could have helped ease your burden... In any event, thanks for bringing some smiles to our faces Friday. Our "outing" down to you was so good for our souls... xox

When I first read this last night, it was 11pm my time, which meant it was 1am your time! I hope you got some rest last night.

Oxygen is a major pain to deal with when you have to travel with it. Jack was on Os the first two plus years of his life and what a sense of freedom we felt when we didn't have to haul an O2 tank along with the vent. It sounds like Harlie is getting there .... slowly, but surely.

Thanks for thinking of me. I think of you often too, especially when you don't blog. Thankfully, I can check FB and know that you are doing okay. I was glad to see you were able to get out an run the Frostbite 15K. You are awesome!

I second Janet's suggestion of using an HME with an O2 port. Thats what we use when we need O2 (which is almost a nightly thing now) and its great. I don't usually comment here but I wanted to let you know I love your blog and check in here often.

And Harlie's sponge bob picture made me cry - what a smart girl. The infinite patience that our (non-verbal) kids are forced to live with is mind boggling. And all I can do is say - I'm sorry I don't understand what you want. Its just unbelievably frustrating.

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!